Partenariats interprovinciaux: Le réseau de cardiologie infantile de l’Ouest canadien Sharon Chow, IA, MSI Coordonnatrice RCIOC

Remerciements Ministère de la santé: Colombie-Britannique Alberta Saskatchewan Manitoba Partenaires du réseau de cardiologie infantile de l’Ouest canadien: Hôpital des enfants de la Colombie-Britannique (BC Children’s Hospital) Hôpital des enfants de l’Alberta (Alberta Children’s Hospital) Hôpital des enfants de Winnipeg (Winnipeg Children’s Hospital) Royal University Hospital Hôpital des enfants de Stollery (Stollery Children’s Hospital) The Western Canadian Children’s Heart Network would like to recognize the contributions of the 4 Ministries of Health for their funding and support of the WCCHN. The WCCHN would also like to recognize the 5 centres that have participated in building the WCCHN.

Objectifs Quels sont les acteurs du RCIOC? Objectifs et réalisations du RCIOC jusqu’à présent. Faire l’étude du partenariat interprovincial mis en place au sein des centres du RCIOC Self-explanatory.

Quels sont les acteurs du RCIOC? Mis sur pied en 2000 Embauche d’une cordonnatrice à temps plein en 2002. Bureau principal du RCIOC: Capital Health (Edmonton) The WCCHN was established in the Year 2000 amongst the leaders of the five centres and the ministry. It was not until 2002 that a Coordinator was hired to work with the five centres in formalizing the relationships and the action plan. Home office of the WCCHN Coordinator: Edmonton: Coordinator and Admin support dedicated for the WCCHN for all 5 centres. This is a photo of some of the WCCHN’s Clinical Operations Committee. Physicians and Nurses meet in person twice a year and via telehealth for an additional 2- 3 meetings. Comité clinique des opérations: Groupe clinicien multicentrique.

The five WCCHN centres are the pediatric cardiology and pediatric cardiac surgery departments of the following sites: (NOTE: All sites will fade in one at a time) BC Children’s Hospital (Vancouver) Stollery Children’s Hospital (Edmonton) Alberta Children’s Hospital (Calgary) Royal University Hospital (Saskatoon) Winnipeg Children’s Hospital (Winnipeg) In addition to covering the pediatric cardiology services within the main centres, there are numerous partnership clinics set up throughout each of their own respective provinces and into the Yukon and NWT.

Raison d’être du RCIOC Quatre des cinq centres offrent des programmes de chirurgie cardiaque infantile (avant-2001) Nombre limité de patients nécessitant des chirurgies cardiaques infantiles. Besoin pour tous les enfants d’avoir accès aux meilleurs soins cardiologiques infantiles dans tous les centres. Prior approx 2001, pediatric cardiac surgery was also available in Winnipeg and Saskatoon; however both of those programs were closed due to various reasons. Limited numbers of patients requiring pediatric cardiac surgery. In 2005, there were a total of 847 pediatric cardiac surgeries performed between the two surgical sites (BC Children’s and the Stollery Children’s). In addition, there were 118 adults who required congenital cardiac surgery. Of the combined 965 congenital surgeries, the majority were from within the two surgical centre’s respective provinces (British Columbia and Alberta). In this year, Saskatchewan had 62 patients and Manitoba had approx. 90 patients who were referred to the Stollery for surgery during this year. Saskatchewan and Manitoba do refer patients to other centres, at their discretion. It was recognized amongst the leaders of the centres and the provinces that there needed to be a system in place to ensure that all children, regardless of where they live, receive optimal pediatric cardiac care….that is the reason for the WCCHN!

Services actuels offerts Chirurgie cardiaque infantile (2 centres) Chirurgie de transplantation cardiaque infantile (1) Services pédiatriques électrophysiologiques (3 centres) Cathétérisme cardiaque pédiatrique (diagnostic et interventionnel): tous les centres. Suivi des cliniques cardiologiques infantiles: Services sur les lieux et cliniques partenaires Cardiaque MR – 3 réservés, 2 autres partagés. Currently, pediatric cardiac services are provided at various levels throughout the 5 provinces: Pediatric Cardiac Surgery (2 centres) Pediatric Cardiac Transplant surgery (1) Pediatric Electrophysiological Services (3 centres) Pediatric Cardiac Catheterization (Diagnostic & Interventional): All centres. Follow-up care pediatric cardiology clinics: On site services and partnership clinics Cardiac MR – 3 centres of 5 have a dedicated pediatric cardiologist with specialty training in cardiac MRI. The other centres have limited access to cardiac MRs and do not have a pediatric cardiologist with the specialty training in MR.

Objectifs du RCIOC Mise en commun des résultats cliniques Collaboration en ce qui a trait aux cas complexes Éducation Mise en commun des ressources familiales et des patients Collaboration en matière de recherche Mise en commun des plans à débattre Because of the diversity of care in the various provinces, the WCCHN’s goal was the ensure that all children had access to the same excellent care regardless of which centre you live in. AS a result of that, 6 goals were established for the WCCHN. A brief description of each of these goals will follow:

1. Mise en commun des résultats cliniques Diverses bases de données utilisées à l’heure actuelle. Élaboration d’une base de données cardiologique infantile interprovinciale. Équipes système d’information multicentrique Comité multicentrique sur la protection de la vie privée. The sharing of clinical results have occurred through various methods of manual data collection and analysis at the local centres. Some centres had a database that they had developed to track the information.

This is the opening screen of the Database This is the opening screen of the Database. It will be a repository of clinical information for all pediatric cardiology patients followed through the 5 WCCHN peds cardiology centres. Web-enabled. Implementation for the database is staged: Edmonton implemented in October 2006. Since its implementation, testing and evaluation has been ongoing to ensure stability of the database prior to deployment to other centres. Saskatoon (February, 2007) Winnipeg (March, 2007) Vancouver (April, 2007) Calgary (May/June, 2007).

2. Collaboration en ce qui a trait aux cas complexes Divers forums existent à cet égard. Une conférence sur la chirurgie cardiaque est organisée par Stollery tous les mardis pour discuter des patients qui sont dirigés pour subir une chirurgie ou discussion générale des patients qui sont des cas compliqués afin d’envisager d’autres options. Discussions en matière de chirurgie: Vancouver et Victoria (Lundis). G et S cardiologique infantile par roulement mensuel. Les cliniciens “pratiquent” dans d’autres centres Clinique de transplantation; cathétérisme cardiaque, études électrophysiologiques Collaboration entre chirurgiens Cardiac Surgical Conference – 2 different conferences exist: Stollery based conference on Tuesday reviews patients that have been received or referred to the Stollery for surgery. Vancouver hosts conference with its partner in Victoria. Pediatric Cardiac M & M Rounds: bimonthly review of 3-4 cases each session. Discussions focus around improvements in practice from both the referring and referral centres. Joint practice opportunities: Clinicians have traveled to other WCCHN sites and worked with the local cardiologists: Has occurred for pediatric cardiac caths, electrophysiological studies and transplant clinics.

Conférence de cas (Patients dirigés vers Stollery) Tous les mardis après-midi participation: Tout le personnel en cardiologie infantile des centres RCIOC, chirurgiens en cardiologie infantile. Étude des antécédents médicaux des patients; Images RM cardiaques Échocardiogrammes, Cathétérisme cardiaque

Résultats: Discussion avec tous les membres de l’équipe concernant les étapes subséquentes: Candidat à la chirurgie. Attente / Réévaluation requise. Patient prioritaire pour la chirurgie. Patient mis sur la liste d’attente.

Améliorer les déplacements des patients: Patients sont informés relativement aux résultats de la discussion par l’entremise du: Cardiologue local Coordonnateur en chirurgie cardiaque Réservation de la pré admission un jour avant la chirurgie.

Par la suite: Une mise à jour concernant le patient est procurée à tous les centres lors de la prochaine conférence.

Soins aux cas adultes congénitaux Janvier 2006 Fréquence: bimensuelle. Mise en place similaire à la conférence de cas pédiatrique. Participation de centres additionnels qui offrent des soins aux patients adultes atteints d’affections cardiaques congénitales St. Paul’s (Vancouver): Peter Lougheed Centre (Calgary); Regina General Hospital (Regina, SK).

3. Éducation Mise en commun des moyens d’enseignement pour les programmes de résidence cardiologique infantile (tous les centres offrent les séances). Séances paramédicales visant à offrir des renseignements pédagogiques concernant d’autres domaines de la cardiologie infantile (pratiques d’unité, transfusions sanguines, etc…..). Télésanté Principale méthode de communication en ce qui a trait aux soins aux patients.

4. Mise en commun des ressources familiales et des patients Mise en commun des ressources familiales à des fins d’enseignement. Directives cliniques à élaborer ou à mettre à jour au niveau du médecin. Les protocoles en échocardiographie sont élaborés conjointement. Engagement multicentrique pour trouver des ressources pour les transplantations cardiaques infantiles à l’intention des cliniciens et des familles.

5. Collaboration en matière de recherche Soins infirmiers: l’enquête multicentrique sur la satisfaction des familles est terminée. Autres initiatives planifiées. To date the Nursing one is now complete. We anticipate more will be planned and coordinated as a network.

Amélioration de la qualité: plein feux sur l’accessibilité aux services Saskatoon: cliniques partenaires additionnelles pour améliorer l’accès aux services de cardiologie infantile dans le sud de la SK. Edmonton: Murmur clinic Clinique de pré admission (Stollery): augmentation de la sensibilisation des familles par l’entremise de l’élaboration d’une vidéo envoyée aux familles avant leur rendez-vous. Murmur Clinic: Edmonton set up a specific clinic in a community centre to see patients who have been consulted to pediatric cardiology with a murmur. Clinic is staffed with a cardiologist and RN; brought back to clinic for a follow-up echocardiogram if necessary.

6. Mise en commun/plans à débattre Objectif visant à maintenir une bonne communication entre les lieux.

Ériger un partenariat Accent base de données: Comités permanents: Comité directeur des TI Comité d’intégration des TI Agents de la protection de la vie privée Ad hoc/Intégrés avec d’autres comités: Comité site Web Coordonnateurs télésanté/AV Comités permanents: Comité directeur Comité des opérations cliniques Comité des coordonnateurs infirmiers Comité consultatif sur la famille Comité CV des adultes Séances paramédicales Comité des relations publiques The partnership has been built on more than just at the clinician level. It has been strengthened through additional departments and it has taken a lot of hard work from all centres to have built the WCCHN to this point. Standing committees of the WCCHN: Steering Committee has representation of senior leadership from the centres and/or ministry representatives. The chair person of this committee and the WCCHN is Dr. Brian Postl of Winnipeg. Clinical Ops (photos shown earlier) has nursing and physician representatives on it from all 5 centres, as well as key physicians and nurses in a specialized area (ex: Thrombosis). Chair of this committee is Dr. Derek Human of Vancouver. Nursing Coordinators: nursing representative from the pediatric cardiology clinic or cardiac surgery program. Chair is Pat Hebden of Edmonton. Family Advisory Committee: 1-2 family representatives per province. Usually chosen by local cardiology family support group. Chaired by the WCCHN Coordinator. Adult CV Committee: Linkage with the adult congenital care nurses through this committee. Allied Health Sessions: Open forums. Sessions are educational, research or service focused. Open sessions for any centre to join – Toronto and Montreal have joined in on these as applicable. Public Relations Committee: Discussion of communications that involve pediatric cardiology are shared to ensure that recognition of multiple centres are fairly represented, if needed. Database specific: The IT Steering Committee will remain as a governing committee over the database for approval of data requests, changes to the database, etc… The Integration committee are IT technical staff that focus primarily on the Integration of the database with local systems. Privacy: focus on information sharing to date. Privacy Impact Assessment will be performed at the local level. Website: part of nursing and family meetings now. Telehealth/AV Coordinators: adhoc.

Information personne-ressource: Sharon Chow Coordonnatrice, Réseau de cardiologie infantile de l’Ouest canadien sharonchow@cha.ab.ca Téléphone: 780-407-1522

Questions ? Merci!